Diagnosed with possible ALS but no weakness
 

I am 30 years old and 5 months ago I recieved a diagnoses (first of 3 opinions) of possible ALS due to muscle fasciculations all over and spasms primarily in left hand. My symptoms have not changed much since then. Recent EMG at Mayo clinic indicated diffuse fasciculations and diffuse mild neurogenic changes in all tested upper and lower extremity muscles but no fibrillation potentials. EMG previously performed had shown minimal chronic neurogenic changes only in the left deltoid and biceps. I have not observed any weakness or atrophy. No abnormalities in lab work or MRI. Is this ALS, BFS, or something else? Looking for some insight. Thanks

Hey, I'm 31 years old and just started having a twitch in my middle finger but not really any weakness either. I'm nervous about possible ALS, and not sure what the weakness feels like. The hand that is twitching feels like I have pain in my wrist and tendon when trying to lift things or make a trigger like motion that makes me weaker but it isn't due to not having the strength, it's more about the pain making it more difficult. Have you experienced anything like that? Also, when you say spasms, what do they look like, is it just a finger twitching?

Wish you the best of luck. Thanks

Have you seen a neurologist yet? If so, what's your diagnosis? I also have the pain in the left wrist while lifting. The spasm I am referring to are contractions in the left hand and arm , "Charlie horse", making it difficult to move them. Only last a few seconds.

Hi!
 

So one of your opinions is from Mayo/an ALS specialist? I only ask since they generally don't throw out the diagnosis lightly. Without weakness or muscle wasting they are unlikely to say that's even probable. Chronic denervation in a muscle isn't ALS--it needs to be active at the time of EMG. Fasciculations that are widespread without weakness or wasting sounds more like BFS. You may have chronic muscle denervation from peripheral neuropathy, but without weakness even that sounds unlikely. How is your back? Have you had an MRI?

Thanks jenng for your input. Yes, I met with an ALS specialist at Mayo that diagnosed with me POSSIBLE ALS. Diagnosis was based on the muscle twitching and asymetrical reflexes (brisker on left side). They also stated the results of my EMG were not consistant with ALS, but future EMG's might assist with a more solid diagnosis.

I am curious as to why they did not mention BFS as a possibilty. University of Chicago hospital stated that due to the chronic nuerogenic changes noted in EMG it is a concern for ALS. However, Mayo did not observe these findings in their EMG. How accurate are these EMG's? I've had two MRI's of head and neck with and without contrast- no abnormalities. The asymetrical reflexes are a concern for me because this symptom is consistant with ALS. Thanks

As far as accuracy of EMG's, I would recommend that your follow-up/future EMG's be at the same center with the same doctor/technician. EMG's/NCS vary widely between providers, so the only way to be more certain about changes is to see the same provider.

I am surprised they didn't mention BFS, also surprised they threw out "possible ALS." Sure, with unequal reflexes they may want to monitor you over time since you are young. But really, unless you start developing weakness then what's the point worrying you prematurely?

I've dealt with benign fasiculation for almost 5 years, and worried myself with the fear of ALS. I have brisk knee reflexes, but they are equal bilaterally. I have chronic denervation in my left foot, which may be related to some lumbar/sacral issues I have. My point, I guess, is I know how anxiety can get to you about this. I've struggled, and finally gotten (mostly!) to the place that I can't worry about something that hasn't shown up yet. ALS shows its face and progresses in a fairly predictable pattern, or so I'm told. Keep an eye on your symptoms, but it doesn't seem clear that it's what you have.